Tuesday, November 1, 2011

Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.

Towards the end of September, the blog The Thinking Person's Guide to Autism hosted a series of exchanges referred to on-site as the Self-Advocate/Parent Dialogues. If you haven't read it, I strongly recommend you do so -- including the comments. Yes, I know that's ten-eleven (depending on how you count) blog entries, many of which have an inordinate number of comments. I make this recommendation anyway -- and recommend it strongly.

During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.

One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.

"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.

Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.

The second problem with that presumption is far simpler. It simply isn't true.

I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.

For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:

He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.

I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.

I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.

More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.

Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.

The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.

I disagree with this in the strongest terms possible.

Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.

I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.

As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.

I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.

Monday, September 12, 2011

In most of medicine, the term "diagnosis" refers to the process by which a doctor (ideally) determines what disease process is underlying a patient's symptoms, as well as the determination itself. To clarify the relationship between the two meanings: diagnosis is the process by which the doctor provides the patient with a diagnosis.

Because diseases are abstractions based on cause (or "etiology" in medical language), a diagnosis serves as an explanation of the symptoms involved. This might sound rather sophisticated and/or complicated, but it's really not. If you go to the doctor's office and complain that your stomach hurts, "indigestion" is an explanation because it refers to a causal process (that is, why your stomach hurts). Were the doctor to use an abstraction based on symptomology (such as "stomachache"), it would not.

Of course, the doctor's explanation for the symptoms can be wrong. Throughout most of medicine, this is referred to as "misdiagnosis". There are also syndromes and the like which we don't know the causes of and times when the doctor can't figure out what's going on. While we know some things about these syndromes and cases (e.g. epilepsy tends to be chronic problem), these "diagnoses" aren't explanations of the symptoms -- they're descriptions of them.

Once you get it, this is really pretty simple. An answer to the question of why your symptoms exist (in more technical language, an "etiological construct") can explain them; a description of the symptoms themselves (in more technical language, a "symptomolgoical construct") can't. Despite this, however, people often make this mistake in a wide variety of ways. There's even a formal name for doing so: "nominal fallacy".

Put yet another way, you cannot say that your stomach hurts because you have a stomachache. "Stomachache" is a symptomological construct -- a label for the stomach pain. You cannot say that you are having difficulty sleeping because you have insomnia. The statement that you "have insomnia" is simply another way of saying that you have trouble sleeping. Neither serves as an explanation. This isn't to say that terms and concepts like "stomachache" or "insomnia" can't be useful, but they can't answer most questions of "why"... because they have nothing whatsoever to do with cause.

I'm making this as clear as possible because there is one field of medicine where the definition of the term "diagnosis" I provided does not apply. That field is psychiatry.

"Mental disorders", as used in psychiatry, are not etiological constructs. They are symptomological constructs. To use my earlier analogy, they are not akin to "indigestion" and are more akin to "stomachache". When a psychiatrist "diagnoses" a mental disorder, they are emphatically not saying anything about the cause of the symptoms you present them with -- they are simply deciding how to describe those symptoms in the standardized and highly formalized language of psychiatry.

The psychiatric "diagnosis" of "major depressive disorder" is simply another way of saying that someone is depressed... only it's far more precise (among other things, it distinguishes "major depression" from less severe or more transient types of depression). The psychiatric "diagnosis" of "bipolar disorder" basically means that someone goes through 'episodes' during which his mood is different from normal (in a clinically significant way). Similarly, the psychiatric "diagnosis" of "autism" basically means that someone isn't following the developmental psychologists' often-bigoted (and why I call it that is a whole 'nother blog post) One True Developmental Path for human beings.

When looked at this way, the way that people tend to accumulate multiple psychiatric diagnoses is easily understood -- for many of the same reasons that I don't think people would be surprised to learn that people with stomachaches also have fevers much more frequently than people who do not. This is simply because fevers and stomachaches can be caused by many of the same things.

This does not, however, mean that "fever" and "stomachache" are the same thing. It also doesn't mean that it's appropriate to treat all people with stomachaches as if they also had fevers.

Moreover, the evaluation of "symptoms" in psychiatry is far more subjective and problematic than it is anywhere else in medicine. The problems with this are anything but simple, even if they're frequently ignored.

For the most part, these represent a sort of diagnostic "fuzziness" which is... resolvable, albeit not necessarily easily. Statistical methods are pretty good at dealing with this sort of issue in a research setting, although the problem remains. It remains an obstacle, but hardly an intractable one. If this problem is not understood, however, it can create a very wide variety of misconceptions.

Other problems, however, are more noteworthy -- and fundamental. For one thing, the defining feature of a "symptom" in medicine is that it's viewed as an indicator of an underlying pathology. Stomachache is a symptom of indigestion because it provides evidence in support of the idea that you are having trouble digesting food. It provides this evidence because problems with digestion tend to cause stomachaches. "Stomachache", in general, is viewed as a symptom of disease because a stomachache is a pretty clear indicator that something is going wrong in the body (even if you don't know what, and even if the problem is fairly minor).

In other words, a "mental disorder" is a disorder because it is viewed as a sign that there is something wrong with the person who exhibits it. Our judgments of what constitutes something being "wrong" with someone, however, are notoriously problematic.

We human beings have a tendency to judge other people based on our expectations and our often-prejudiced personal (and/or cultural) views on what people should be. When people fail to live up to these, we tend to conclude that there's something wrong with them, rather than concluding that the problem was with our views and expectations.

For instance, homosexuality usedtobe a DSM mental disorder (and even though most sources will state that it was removed in 1973, this is not entirely accurate). Moreover, its official status as such has a long history of being used to justify the torture (via abusive "treatments") both of homosexuals and people judged as being "at risk for" homosexuality.

Then there's the issue of so-called "diagnostic redefinition", something which is rather hard to understand for people who don't understand that psychiatric disorders are symptomological constructs.

Diagnostic redefinition is relatively easy to understand if you look at approximate analogues involving symptomological constructs in the world of general medical practice. In this case, I'm going to use the construct of obesity for the purpose of explanation.

At present, obesity is most commonly defined in terms of something called "body mass index" (BMI) -- a calculated value based on height and weight. Neither BMI nor obesity, however, are etiological constructs -- they're descriptive constructs. In the case of obesity, it's a symptomological construct, presently defined by a BMI of thirty or higher (in most countries, anyway).

If, however, medical researchers were to find that a different cutoff point -- say twenty-five (which, incidentally, is the cutoff point in Japan) or thirty-five -- was more meaningful, the cutoff point would change to reflect this. If the cutoff point was lowered, a number of people would suddenly find themselves "obese" when they weren't before -- something which is called "broadening criteria" for obesity. If the cutoff point was raised, a number of people would find themselves no longer considered "obese", due to something called "narrowing criteria".

Note that nothing would really have changed with these people themselves. Only the terms used to describe them -- the label they receive, in other words -- would have changed. This is the essence of diagnostic redefinition in psychiatry.

Despite this, however, it's often nowhere near so simple -- especially when it comes to the DSM. It's quite common for criteria to broaden and narrow at the same time. This usually happens when rather than changing a numeric score to broaden or narrow criteria, the metric is changed or redefined.

To continue the analogy, if we were to find that some other measure of obeisity (e.g. total body weight, percentage body fat) was more meaningful than BMI, our definition of obeisity would shift to accomodate this. Obeisity would be redefined in terms of this new metric, and a number of people would suddenly "gain" or "lose" a "diagnosis" of obeisity without changing one whit themselves. The newly "diagnosed" or "undiagnosed" wouldn't have changed -- the language used to describe them would have.

This is precisely what happens every time a new edition of the DSM comes out. Sometimes it happens more often.

Note that none of this means that the "diagnosis" of "obesity" isn't useful or meaningful. None of it means that obesity isn't real (although if one is feeling particularly philosophical, one can point out that it's only a label or descriptor, and as such the phrase "for a certain value of 'real'" applies -- it's only "real" in the sense that "redness" is; similarly, "autism" is only real in the senses that "intelligence" is).

There are countless other problems with psychiatric diagnosis. Quite frankly, I'd write about them more, but this entry has been sitting half-completed for more than long enough already.

I just hope that this helps people understand certain matters and helps clear up some of the assorted confusion regarding the topic. Countless authors -- in academia, in the blogosphere, in the print media -- clearly don't understand a lot of what I try to explain above.

Wednesday, July 13, 2011

Simply put, I managed to pretty thoroughly burn myself out. For a while, I was in no shape whatsoever to blog (especially on top of my other committments), and I'm afraid that I let myself get out of the habit of doing so.

As this message indicates, I'm trying to get back into blogging, and will hopefully follow this up with a number of relevant posts.

For many of the "theories" we covered, we were expected to write a little summary, answering a series of ten questions. I've already posted one set of my answers to these here. At the end of the class, however, we were expected to answer these questions for ourselves. The professor called this "making pasta". I call the process of "making pasta" from assorted theories along the lines which he suggested "highly unethical", "academically dishonest", or "bullshitting" -- depending on what, exactly, you intend to do with this "pasta" after you "make" it.

That said, I did answer the questions anyway. I just didn't pick up elements willy-nilly from assorted "theories" based on their personal and ideological appeal.

It occurs to me that these answers may be of interest to assorted and sundry readers of this blog. So, without further ado...

1-How does the theory conceptualize the basic beliefs about people? Does the theory see people as "good", "bad", neutral, capable of growth, proactive or reactive to the environment?

Theories and theoretical positions are valid within a clinical environment to the extent that they either are supported by the available empirical evidence ("are accurate") and/or have been demonstrated to improve client outcomes ("are useful"). Theories which possess accuracy but have yet to demonstrate utility can be justified on the grounds of improving understanding; theories which have demonstrated utility but lack accuracy can be justified on the grounds of the ethical principle of benevolence. Theories that have neither property have no business anywhere near clients in a clinical environment.

While some basic propositions about humanity are answerable by the currently available evidence (e.g. the available research on education, development, and cultural differences strongly supports the idea that people are capable of learning), others are not. By definition, answers to such questions are speculation or assumptions; representing them as other than this, if done for financial or academic gain, constitutes fraud.

2-How does the theory describe the function of personality? What is the purpose of our "personality"; what needs does the personality meet?

Assumptions about human nature are dangerous for counselors and their clients. They should be avoided whenever possible. At the moment, the available empirical evidence does not even begin to answer this question. No clinical technique should be predicated on answers which do not exist.

3-How does the theory describe the "structure" of personality? What IS our personality? What does it consist of?

The current state of knowledge about personality and individual differences are such that we can say things about it (e.g. that extroversion typically remains fairly constant over time; that people who report that they prefer showers over baths statistically tend to be more extroverted than those who do not) but cannot say much beyond that. Again, assumptions hurt clients and should be avoided where possible.

4-How does the theory describe how we develop into a "normal person"?

While developmental psychologists have done a fairly good job of mapping out the general bounds of the developmental path which a statistical majority of people follow from the context of Piagetian constructionism, assumptions such as the belief that deviation from this path must necessarily be harmful are, by their nature, both biased and bigoted.

Generally speaking, mental health isn't – in the sense that it is impossible to define "mental health" except as an absence of and lack of vulnerability to problems. This same problem is why medicine is defined as the science and practice of treating and preventing disease rather than as the promotion of good health.

Assumptions such as the regularly-made assumption that an individual must conform to some preconceived notion of "functioning" to be "healthy" have no place in clinical practice.

5-How does the theory describe how we develop into "abnormal" people?

Problems with psychological components can arise from a variety of sources.These can be environmental in nature (e.g. exogenic depression induced by parental mortality), biological in nature (e.g. forgetfulness induced by traumatic brain injury), social in nature (e.g. lack of assertiveness and ability to self-advocate induced by pervasive prejudice and paternalism), historical in nature (e.g. emotional scars left by traumatic experiences), or have a completely different nature which I couldn't think of when writing this. Assumptions in this regard have a distinct tendency to harm clients (i.e. assumptions on the cause of a specific problem can be and often are wrong, and treatment methods selected based on incorrect assumptions tend to be unnecessarily ineffective and/or harmful).

6-How does the theory conceptualize the process of counseling? How does it work, in general?

Counseling is defined (Merriam-Webster) as "professional guidance of the individual by utilizing psychological methods especially in collecting case history data, using various techniques of the personal interview, and testing interests and aptitudes".

Or, in other words, counseling someone means finding out what the problem is and helping them decide on a course of action to take about it. In common use, assisting or guiding the person in implementing the course decided on is also considered part of the counseling process.

7-How does the theory conceptualize the specific techniques of counseling?

Evaluation procedures, regardless of their theoretical origins, are acceptable to the extent that they have been shown to produce valid data. Therapies are acceptable to the extent that they have been shown to improve client outcomes. Tests and therapies which are not supported by the available empirical evidence should be considered inaccurate and/or harmful by default and have no business being practiced in practice outside of an IRB-approved research protocol.

8-How does the theory conceptualize the roles/responsibilities of the counselor?

The counselor's role is, by definition, to help the client arrive at a solution to the presenting problem.

9-How does the theory conceptualize the roles/responsibilities of the client?

The client's responsibility is to arrive at a solution to the presenting problem.

10-What is the utility of the theory -- strengths, weaknesses, limitation, applicability?

Theories are valid to the extent to which they explain existing data and predict future data. Good theories possess two properties which most of those we've studied have lacked: domain-specificity and falsifiability. A theory which possesses domain-specificity attempts to explain only a limited set of information; grand, over-arching theories of everything tend to be wrong more often than not. A theory which is falsifiable is testable and does not attempt to explain away data which does not fit its predictions. Good theories are typically constructed to fit the data they are attempting to explain rather than according to the author's ideological prejudices.

When evaluated by this standard, which is considered incredibly basic in the field of detecting pseudoscience and health fraud, the vast majority of the theories we've studied in this class come out extremely poorly. In the absence of good theories, the best option is generally to practice as atheoretically as possible.

There are some things which I'd change if I were writing this today. There are many more things which I wouldn't. In any case, there are many little nuggets of interest in here...

Saturday, January 8, 2011

When you work with one of the most vulnerable populations in America, you quickly start to realize just how nasty the human race can be. While I don't know who said it, there's a rather famous quote which about sums it up: "There is no such thing as an inhuman act, for there is no act so vile that you cannot find a human willing, even eager, to commit it."

Some of the things I have seen defy description. The things I've seen news coverage of are worse. This was rather spectacularly demonstrated yesterday, with an article from the LA Times that highlights this in a truly awful fashion.

I've tried to write out the story several times. I can't, as hard as I try. As such, I'll just quote the article -- which really does speak for itself.

The package mysteriously left at Los Angeles County Sheriff's headquarters shocked even some of the department's most grizzled detectives: A hundred hours of video footage showing severely disabled women, many in diapers, being sexually assaulted by anonymous men.

The attacks appeared to have taken place at residential care centers, authorities said, and most of the attackers are believed to be employees. One suspect appears to be a paraplegic patient, hoisting himself off his wheelchair, before removing his diaper and that of his victim's, and beginning his assault.

The footage, dropped off in March, has left detectives with few leads. Though authorities are confident the scenes were shot in residential care facilities, it's unclear if they are located in Los Angeles County. Much of the footage is so grainy that only the faces of four of the estimated 10 men could be made out.

Authorities Thursday asked for the public's help in identifying the men, releasing screenshots and composite drawings of the attackers.

"Maybe they can identify these people," said Sgt. Dan Scott. "Maybe they can identify the room."

Detectives are also hoping the tipster who dropped off the package will come forward. The footage left at sheriff's headquarters in Monterey Park came with a note explaining how he discovered the video. He had been commissioned by a man to scrub a computer hard drive, but before he did, he burned 100 hours of video files onto DVDs.

Detectives said the women in the videos appear to be between 20 and 40 years old, some appearing almost entirely unresponsive. The men appear to also be between 20 and 40. The footage, detectives said, appears to be a collection, with some men appearing in more than one scene. Some of the footage was shot with a handheld camera, with the rest appearing to be captured by a security camera, detectives said.

Enhancing and analyzing the video took several months, authorities said. Detectives have not contacted local residential care centers yet, an official said.

Anyone with information is asked to call Special Victims Bureau detectives at (866) 247-5877. Anonymous tipsters can call (800) 222-TIPS.

Friday, January 7, 2011

On his blog, the rather well-known blogger and commenter, Harold Doherty, writes:

I was aware that a medical society tribunal in the UK had found problems with the MMR study but I was unaware that a court of law, or governing medical society tribunal, had found Wakefield guilty of the serious offence of fraud.

If anyone knows which court of law, or governing medical society tribunal, found Dr. Wakefield guilty of fraud could you post a link to this site please?

The "medical society tribunal" Doherty refers to was the British General Medical Council, (or "GMC"; see their website here). They are hardly a mere "medical society tribunal" -- they're a governing body established by legislative action. They have a direct government mandate... and the legal authority to control who can and cannot practice medicine in the UK.

I suppose you could call them a "governing medical society tribunal", per Mr. Doherty's instructions. I would not: they're a regulatory body tasked with a judicial function. They are not part of any medical society (although the memberships certainly overlap!).

In its sanction against Dr. Wakefield, the GMC found (among other things):

The children described in the Lancet paper were admitted for research purposes under a programme of investigations for Project 172-96 and the purpose of the project was to investigate the postulated new syndrome following vaccination. In the paper, Dr Wakefield failed to state that this was the case and the Panel concluded that this was dishonest, in that his failure was intentional and that it was irresponsible. His conduct resulted in a misleading description of the patient population. This was a matter which was fundamental to the understanding of the study and the terms under which it was conducted.

In addition to the failure to state that the children were part of a project to investigate the new syndrome, the Lancet paper also stated that the children had been consecutively referred to the Department of Paediatric Gastroenterology with a history of a pervasive developmental disorder and intestinal symptoms. This description implied that the children had been referred to the gastroenterology department with gastrointestinal symptoms and that the investigators had played no active part in that referral process. In fact, the Panel has found that some of the children were not routine referrals to the gastroenterology department in that either they lacked a reported history of gastrointestinal symptoms and/or that Dr Wakefield had been actively involved in the process of referral. In those circumstances the Panel concluded that the description of the referral process was irresponsible, misleading and in breach of Dr Wakefield’s duty as a senior author.

The statement in the Lancet paper that investigations reported in it were approved by the Royal Free Hospital Ethics Committee when they were not, was irresponsible.

In other words, the GMC found that Wakefield lied repeatedly in the Lancet paper. Moreover, he concealed financial interests in the results being what they were:

Regarding the issues of conflicts of interest, Dr Wakefield did not disclose matters which could legitimately give rise to a perception of a conflict of interest. He failed to disclose to the Ethics Committee and to the Editor of the Lancet his involvement in the MMR litigation and his receipt of funding from the Legal Aid Board. He also failed to disclose to the Editor of the Lancet his involvement as the inventor of a patent relating to a new vaccine for the elimination of the measles virus (Transfer Factor) which he also claimed in the patent application, would be a treatment for inflammatory bowel disease (IBD).

In summary of their findings, the GMC wrote:

The Panel made findings of transgressions in many aspects of Dr Wakefield’s research. It made findings of dishonesty in regard to his writing of a scientific paper that had major implications for public health, and with regard to his subsequent representations to a scientific body and to colleagues. He was dishonest in respect of the LAB funds secured for research as well as being misleading. Furthermore he was in breach of his duty to manage finances as well as to account for funds that he did not need to the donor of those funds. In causing blood samples to be taken from children at a birthday party, he callously disregarded the pain and distress young children might suffer and behaved in a way which brought the profession into disrepute.

As such (among other things):

The Panel concluded that Dr Wakefield’s shortcomings and the aggravating factors in this case including in broad terms the wide-ranging transgressions relating to every aspect of his research; his disregard for the clinical interests of vulnerable patients; his failure to heed the warnings he received in relation to the potential conflicts of interest associated with his Legal Aid Board funding; his failure to disclose the patent; his dishonesty and the compounding of that dishonesty in relation to the drafting of the Lancet paper; and his subsequent representations about it, all played out against a background of research involving such major public health implications, could not be addressed by any conditions on his registration.

In short, Wakefield was found to be a dirty, rotten liar who faked data for publication in The Lancet. In common scientific parlance, they found that the paper was a classic example of academic fraud.

Edit: Kev of LBRB does an excellent analysis of the issue here, focusing less on the legal findings and more on illustrating the fact that Wakefield's paper was fraudulent.